1. < Neuroendocrine Tumors (NETs)

Interested in hearing people's experiences with PRRT

Posted by SMB @sherryboynton, Mar 29, 2019

Sorry if this has been discussed before, but I was interested in hearing peoples experience with PRRT (Peptide Receptor Radionuclide Therapy)? I live in Georgia and have an appointment at Mayo in Jacksonville next month and I was wondering if this was something they would discuss...

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

KL | @klpetts | Nov 14, 2020
In reply to @hopeful33250 "I am sorry to hear of your COVID diagnosis, @klpetts. What sort of symptoms were you..." + (show)
@hopeful33250

I am sorry to hear of your COVID diagnosis, @klpetts. What sort of symptoms were you having when you were tested for COVID?
I hope you begin to feel better soon. What does your doctor say about your recovery time?

Jump to this post

All I had was a 'new cough', have also had some mild SOB, and tire easily. Off of work through Nov 25. Was not really given a recovery time; just 'DO NOT COME TO THE CLINIC' unless absolutely necessary; meaning needing to go to the ED. Slowly starting to feel better.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 14, 2020
In reply to @klpetts "All I had was a 'new cough', have also had some mild SOB, and tire easily...." + (show)
@klpetts

All I had was a 'new cough', have also had some mild SOB, and tire easily. Off of work through Nov 25. Was not really given a recovery time; just 'DO NOT COME TO THE CLINIC' unless absolutely necessary; meaning needing to go to the ED. Slowly starting to feel better.

Jump to this post

Continue to rest and take good care of yourself, @klpetts.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 24, 2020
In reply to @klpetts "Thanks for checking in on my. My energy level was returning, then I was given another..." + (show)
@klpetts

Thanks for checking in on my. My energy level was returning, then I was given another 'unwanted diagnosis'. I tested positive for covid. So my monthly injection that was due on Nov 12 has been delayed until Nov 30. My lab work and imaging have also been moved from Dec 10 to Nov 30. Getting lots of rest and drinking lots of water.

Jump to this post

Hi @klpetts,

I just wanted to check in with you to see how your recovery from COVID is coming along. It looks like your monthly injection will be next week. Sometimes recovery from COVID takes time.
Are you beginning to feel better, yet?

REPLY
1 reply
KL | @klpetts | Nov 25, 2020
In reply to @hopeful33250 "Hi @klpetts, I just wanted to check in with you to see how your recovery from..." + (show)
@hopeful33250

Hi @klpetts,

I just wanted to check in with you to see how your recovery from COVID is coming along. It looks like your monthly injection will be next week. Sometimes recovery from COVID takes time.
Are you beginning to feel better, yet?

Jump to this post

I am feeling better. Have been released to return to work. Next week Monday I have a full day of appointments; blood work, CT, dr visit and injection. Thanks for checking in on me. Karin

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 25, 2020
In reply to @klpetts "I am feeling better. Have been released to return to work. Next week Monday I have..." + (show)
@klpetts

I am feeling better. Have been released to return to work. Next week Monday I have a full day of appointments; blood work, CT, dr visit and injection. Thanks for checking in on me. Karin

Jump to this post

@klpetts Hi Karin,

I appreciate the update. I'm so glad that you are feeling better. I hope you have a wonderful Thanksgiving. Keep strong!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 14, 2020
In reply to @klpetts "I am feeling better. Have been released to return to work. Next week Monday I have..." + (show)
@klpetts

I am feeling better. Have been released to return to work. Next week Monday I have a full day of appointments; blood work, CT, dr visit and injection. Thanks for checking in on me. Karin

Jump to this post

@klpetts Hello Karin,

I just wanted to check in with you to see how you are doing. I recall that at the end of November you were having some blood work, a CT, and an office visit. How are you feeling now? Do you have any results from the tests you had last month?

I'd enjoy hearing from you again. Will you post again when it is convenient?

REPLY
1 reply
KL | @klpetts | Dec 20, 2020
In reply to @hopeful33250 "@klpetts Hello Karin, I just wanted to check in with you to see how you are..." + (show)
@hopeful33250

@klpetts Hello Karin,

I just wanted to check in with you to see how you are doing. I recall that at the end of November you were having some blood work, a CT, and an office visit. How are you feeling now? Do you have any results from the tests you had last month?

I'd enjoy hearing from you again. Will you post again when it is convenient?

Jump to this post

Yes, Nov 30 I had lab work, CT and office visits. Lab work showed that my tumor marker count is now down to 158; one year ago it was over 1100. Platelet count is at 53. CT results showed a slight decrease in in the size of the pancreatic tumors. Because the cancer had also spread to bone in March a PET CT was ordered, that was done on Dec 10. Those results showed a slight decrease in activity in the abdominal lymph nodes and bone. Will have repeat labs next week to check the platelet count, the octreotide injects will continue every four weeks and a repeat PET CT in March with labs and office visit. Feeling good for the most part; just tire easily.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 21, 2020
In reply to @klpetts "Yes, Nov 30 I had lab work, CT and office visits. Lab work showed that my..." + (show)
@klpetts

Yes, Nov 30 I had lab work, CT and office visits. Lab work showed that my tumor marker count is now down to 158; one year ago it was over 1100. Platelet count is at 53. CT results showed a slight decrease in in the size of the pancreatic tumors. Because the cancer had also spread to bone in March a PET CT was ordered, that was done on Dec 10. Those results showed a slight decrease in activity in the abdominal lymph nodes and bone. Will have repeat labs next week to check the platelet count, the octreotide injects will continue every four weeks and a repeat PET CT in March with labs and office visit. Feeling good for the most part; just tire easily.

Jump to this post

Hello @klpetts,

It's so good to get an update from you. I'm glad to hear that your tumor marker count was down by that much over the past year. I'm glad that you are feeling good. Tiring easily is probably to be expected?

I hope that your next blood test and PET CT in March show more improvement.

I look forward to hearing from you again.

REPLY
gapsc | @gapsc | Jan 14, 2021

I guess this is the end of the run on PRRT. I have lung nets with metastases. I am scheduled for Prrt. Also on list to get covid vaccine a week before. Any one have experience with getting the vaccine and interference with PRRT? Do I get it or wait for full immunity.

REPLY
4 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 17, 2021
In reply to @gapsc "I guess this is the end of the run on PRRT. I have lung nets with..." + (show)
@gapsc

I guess this is the end of the run on PRRT. I have lung nets with metastases. I am scheduled for Prrt. Also on list to get covid vaccine a week before. Any one have experience with getting the vaccine and interference with PRRT? Do I get it or wait for full immunity.

Jump to this post

Hi @gapsc, these are good questions to ask your oncologist regarding the COVID vaccine and its possible interference with the effectiveness of PRRT or PRRT disrupting the effectiveness of the vaccine. I would ask not only about the first shot a week before PRRT, but also remind them that a second shot is required.

Gapsc, is the metastases a recent diagnosis?

REPLY
View MoreView Less
Please sign in or register to post a reply.